1 Step Forward, 1 Step Sideways

My dad drove up to go with me. I knew it would be boring for him, atbest, but I think he really wants to do something to alleviate his ownworry. I'd wanted him to sit with me during one of the IVSM treatmentslast week, where there's a little more action, but that didn't work out.

For the exam, Dr. O did some of the same tests as last time.

Toe taps, L and R [“That's better!” but still not perfect]

Scratch test: back, tummy, and soles [better on back, a little better on foot, still really numb on right tummy]

Reflexes, all [the right knee is still a bigger kick than the left, as is the right sole]

Spinal cord: “We can't rule out a tumor without a biopsy, but whenlooked at with your symptoms, we don't think that's what it is. We'llmonitor it.” Uhh…thanks?!

Brain: there are “several white spots” on the brain MRI. “If you were 80,they'd be normal. But you're only 26, so we're going to watch these.”

Lumbar puncture: no specific mention of O-bands, so I assume I didn't have2 or more, which would be enough for a diagnosis. He did say, however,that it did show “evidence of inflammation,” which is in keeping withMS and other similar autoimmune diseases.

IVSM (steroid treatment): we could both tell I had some improvement after thetreatment last week. I'm happier being able to walk more steadily,faster, and farther, and I know Lula appreciates going on real walksagain. Dr. O seemed cheered

There's not quite enough evidence for him to give me an MS diagnosis at this point. I'm in a frustration/relief cycle over that. I understand why he can't give me the green light. Here's a link to the criteria they use; the bar is high for we who have had only 1 attack.

Because of that, Dr. O asked me, almost pleaded with me, to try to remember another time this had happened. Previous numbness? Blurry vision? Ticks or insect bites? Pain, tingling, anything? No, no, and no. I feltlike he really wanted me to be able to describe one, because that wouldknock us off the fence into definite MS.

So…I'm scheduled for another round of MRIs in three months (July19) and another follow-up appointment a few weeks after that. If there are anychanges (new white spots, or larger ones), I'll get diagnosed. At thatpoint, we'll discuss my treatment options.

But first, more blood tests! If they poke any more holes in me, I'm going to leak when I drink. After the appt, I went to the lab so they could run a few more testsfor rarer forms of lupus, which could conceivably mimic MS and accountfor my symptoms. Dr. O didn't think to this was a likely scenario,since my basic lupus screens have all come back negative, but he's verythorough and conservative.

He's not dragging his feet, though! He gave me the option of considering starting treatmentnow, if I felt strongly that I should. He feels we have time to wait alittle longer and see what shapes up — I'm compelled to agree withhim, though I really appreciate his seeking my input on the matter.

The little I know about the four treatment options is not so hot. They're all injections – some daily, some weekly or a few times aweek. At best, they have about a 30% chance of putting off ordiminishing the effects of future exacerbations. Oh yeah, and they allcost $1800 a month or more. (My insurance might cover some/all ofthat, but I'm not going to ask until I absolutely have to!)

More waiting! Life goes on, and I try to keep the darker thoughtsaway. Like, in 3 months, my brain might have more holes in it. (I am what I eat, and I'm turning into swiss cheese!) Or, more bittersweet — if Ihave a flare up in less than 3 months, I'll get a diagnosis! Less wait, worsecrap to deal with — a bargain with the devil, to be sure.

I don't know how often I'll be updating while I wait for the next MRIs. In a way, no news is good news. To keep from having to check in daily (the horror!), subscribe to the RSS feed using the link in the left column, or click here for email notification.

Thanks to all for your good wishes. I've never been so prayed about in my life, and I can swear it's working. At the least, it's very flattering, so keep it up.